- July 2, 2022 at 8:13 pm
In May 2022 I had an isolated lymph node recurrence of melanoma in my inguinal node. PET/CT and brain MRI confirmed no other spread. BRAF negative. Oncologist gave me the option of upfront surgery followed by adjuvant immunotherapy, or 2 doses of neoadjuvant immunotherapy (IPI/Nivo), followed by a restaging scan at week 6, then possible surgery and possible additional immunotherapy if needed. I took the neoadjuvant option as my oncologist stated it can show much more durable results, with some patients not even needing surgery at all after the 2 neoadjuvant doses. I am 1.5 weeks out from my second dose, and will be getting my restaging scan in about 1.5 weeks. So far I have experienced very minimal side effects, and my lymph node does not seem to have changed in size very much. This worries me a bit that I may not be responding to the treatment. I have read that immunotherapy can sometimes take months to show results so I am a little curious as to what they are expecting to see after only 6 weeks of treatment (2 doses)? Has anyone else been down this road? Part of me thinks that maybe the changes may be so subtle that only PET/CT can tell…or that perhaps they are looking for disease activity (SUV uptake) as a signal that immunotherapy is working?
- July 2, 2022 at 10:58 pm
Am sorry for your recurrence. I hope some of the experts here will post and help you out.
In a way, I think I did neo-adjuvant: in that I was stage III and kept having local recurrences so in the end they gave up on repeated surgeries and put me on immunotherapy. This didnt work either, until they added TVEC and then I started responding. I think if I had not started responding then I would have had surgery (this was the plan before TVEC became a possibility).
I am wondering, maybe if the immunotherapy is working then perhaps they would delay surgery? And give it a chance. If progressing then they could do surgery. So you have both options.
I cant remember the evidence now, but am also wondering if you do immunotherapy before surgery the immune system may recognize the cancer and even after surgery maybe it could still remember and so improve your chances. I think thats the theory but you would have to search for neoadjuvant here or on bubbles’ blog.
I think two doses is too short for immunotherapy to work (unless you are super lucky) but this does not mean the strategy is not working. Am wondering though if you do have surgery soon, would they keep you on immunotherapy (adjuvant) after the surgery?
Good luck and hope for good scans Mark
Scott 22, if you go to the 37:00 min mark, Dr. Long of Australia explains neo-adjuvant treatment and how in Australia their trial is run. It is a very interesting area of research and being able to see how the pathology looks early on, dr. get a good idea if treatment is working and if more treatments are needed. https://www.youtube.com/watch?v=LPhuuC4QnTw
- July 3, 2022 at 2:52 pm
Thanks Mark and Ed. It is interesting for sure. I’ve just seen a lot of information online regarding immunotherapy sometimes taking months to work…seems interesting they only give it 6 weeks in the neoadjuvant setting. I’m trusting the numbers and trusting the doctors!
- July 3, 2022 at 5:57 pm
Scout22, you are correct that it “can take” months for immunotherapy to work and for some melanoma patients delayed responses do happen, but the neoadjuvant research has changed the view of things for what happens for the majority of patients with early smaller volume disease. The nice thing about this area of research is by taking out the tumors and looking under the microscope they have been able to see early if immunotherapy is working and now can make predictions using pathology report and early scans as to outcomes for neoadjuvant patients who have smaller volume disease. The neoadjuvant field is only a few years old and growing quickly, you won’t find a lot of information of how it works long term because it is so new. Dr. Long from Australia is one of the leading experts in melanoma and is very involved in this new area of research. Here is an article with some of the data on how patients do. https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.10015
- July 3, 2022 at 6:32 pm
JoykParticipantMy husband had surgery to remove a brain tumor, then 2 doses of IPI/Nivo before he had a bad reaction and had to stop. About 6 weeks after the second dose he had a ct of his lungs. All of the tumors were slowly responding. By 7 months later he was NED. That was 2 years ago. Now he’s just dealing with radiation induced brain nicrosus.
- July 3, 2022 at 11:48 pm
- July 4, 2022 at 8:08 am
Sorry you are having to deal with all this, however, you have every reason to hope for a good response one way or another. If surgery is on your horizon, followed by adjuvant therapy, that’s okay too. Here are a zillion articles, most with my take in red below them, on neoadjuvant therapy (just breeze over those using BRAF/MEK inhibitors) – Neoadjuvant articles Bottom line: NEOadjuvant therapy is showing even better results than adjuvant therapy, even if you have to have surgery.
Melanoma specialists have fought for years for local oncologists to understand that with immunotherapy you must be, “Patient with the patient!!!” Sometimes a picture speaks volumes. In this primer of melanoma treatments, scroll to the slide that shows “Time to Response” – Primer for Current Melanoma Treatments – New and Improved Version 2022!!!!
I am glad you are getting the care you are. Many ratties fought for it!!! I am one. Dx’d with Stage IIIb melanoma in 2003 with no therapies other than cut-it-out available. Stage IV with brain and lung mets in 2010. SRS to brain. Surgery to remove right upper lobe of lung. 6 months later, gained admission to a phase 1 nivo trial with two arms – one for patients with active disease and one for folks like me who had had their melanoma zapped and cut (ie adjuvant therapy). We did well!!! Still here and NED for melanoma ever since.
Hang tough. I wish you my best. Celeste
- July 15, 2022 at 5:08 pm
I got your email, however the return email was just the melanoma.org address so I had no way to respond to you directly. We used to be able to do that, but I don’t know if it is not working or you didn’t add your address. At any rate – here is my response:
Of course we all much prefer that we never have melanoma and any we have just F’n Disappear! However, it is often far more complicated than that. If you looked at the chart that I directed you to in your previous post, you will see that median time to response is 3 months, but there are those who do not respond until 6-9 months out. Further, not all lesions respond with the same speed.
In regard to any lesions that seem to have grown – Immunotherapy by its very nature causes an influx of various cells to the lesion. That is – that is what it does if it is working. There are cells causing and responding to inflammation and hopefully cells that are actually killing the melanoma. This” on scans and was once referred to as “pseudo-progression”. However, your oncologist is correct. A biopsy is the only way to tell if there are other cells present, ongoing inflammation and tumor necrosis, or just melanoma. In melanoma, speculating is never wise.
Your pattern of a “mixed response” is not uncommon. Nor is inflammation of surrounding lymph nodes while on immunotherapy. So you have every reason to continue to hope for an excellent response in the end. In my trial, if there was ever ANY increase in size to the tumor you were off the trial. (This was back in 2010 and before we knew better.) One poor guy had his first set of scans 3 months in and was found to have developed nodules in his lungs and increased size in his lesions. He was yanked off the trial. However, as the oncologist cast about for new treatment for him, he re-scanned him a couple of months later only to find that the lesions (all of them) were shrinking. A few months later, more shrinking even though no additional treatment of any sort had been given. Within a few months more, the patient became NED with no further treatment. So —- We have learned to be patient with the patient and always double check what is going on with a biopsy!
A better plan for all of this is to use ctDNA to measure response. (Circulating DNA). This is a simple blood draw that is done at the start and then followed to check for the level of bits of tumor DNA in the patient’s blood. If it is decreasing, the patient is responding. If ctDNA levels are increasing – melanoma is growing. Unfortunately, this is not widely available – though we have known about it for YEARS. Use the search bubble on my blog to learn more about “pseudoprogression” or “ctDNA”.
You still have every reason to hope for a good response. Hope this helps. Celeste
Thanks Celeste. I am still hopeful for a good response. I feel like at our initial consultation, my oncologist made it seem like Neoadjuvant immunotherapy was a slam dunk, even advising I might respond so well that surgery wouldn’t even be needed. I always kind of thought that was a bit aggressive considering what I’ve seen and read about average response time. I feel now like what he said about complete response in 6 weeks is more the exception than the rule. I received dose 3 of Ipi/Nivo yesterday, now I am pending contact from surgeons to have a consult and discuss lymph node removal.
- July 16, 2022 at 4:17 pm
- You must be logged in to reply to this topic.